There are 1,300 children in Northern Ireland with life-limiting or life-threatening conditions.
Together for Short Lives is working in partnership with the sector in Northern Ireland to secure funding to implement the Department of Health’s ‘Providing High Quality Palliative Care for Our Children: A Strategy for Children’s Palliative and End-of-Life care 2016-26’.
The recommendations have been produced by a project group of healthcare professionals, officials and representatives of the Northern Ireland Children’s Hospice.
In 2020, The New Decade, New Approach Deal for restoring the Executive stated that it would “provide increased investment to fully implement service improvements for palliative and end of life care including enhancing the contribution of hospices; and to increase support for palliative perinatal care.”
The Department of Health ‘Health and and Social Care Workforce Strategy 2026’, published in June 2022, refers to the children’s palliative care strategy and states that the aim is to improve children’s lives in real terms. It states that the children’s nursing workforce has to reflect changing population health needs, increasing complexities of conditions, the opportunities of innovation in healthcare alongside similar demographic workforce issues to the other fields of nursing
It is now crucial that the Department of Health in Northern Ireland allocates funding and develops the infrastructure needed to implement the children’s palliative care strategy. There is much to do to make sure that seriously ill children in Northern Ireland and their families can access the palliative care they need, when and where they need it. We ask that the department takes the following action:
- Adequately fund children’s palliative care to meet demand by providing parity of funding for both children’s and adults’ palliative care.
- Prevent family breakdown: Services need to be better organised around families and not institutions so it is easier for them to navigate the system and access the care and support they need. The department should commit to funding short breaks to provide respite care for families – giving them time to recharge their batteries. This would reduce the likelihood of family breakdown. Families should be able to access planned and emergency short breaks both inside and outside of their home.
- Nursing care today and tomorrow: Make sure that there is a sustainable children’s palliative care workforce in Northern Ireland. Children’s palliative care requires a well-trained, highly-skilled workforce and children and young people should have access to specialised care.
- Give young people dignity and respect – bridging the cliff edge in care between children’s and adult services: Making sure that all children and young people with long-term conditions have access to timely, high-quality transition planning to adult services.
We also call on the Department for Communities to lift the baby benefit bar by allowing families with children under three with life limiting and life-threatening conditions to access the mobility component of the disability living allowance so they can purchase a specially adapted vehicle to carry life-supporting equipment. Currently the benefit is only available to children aged three and above.